Weird Side Effects

[Guest guest]

Vicki,

See my comments in line.. Wow..I thought I wrote this post...

I have also posted in colour Burgundy (under Sharons comments) - Sue (Aussie)

> Hi! Just checking in to see if anyone has noticed weird side

effects such as the following (Since they are driving me crazy lately):

>

> 1. Nail weirdness (fingers and toes). Both my big toenails fell

> off. They did grow back, but they are weird now. My fingernail

> cuticle area (where the " moon " is) is deformed -- not a moon

anymore, but more a moon with a tumor!

===============

Sharon: I or the first time have nice long thicker nails than before

gleevec.I do however have a weird white spot on one nail.Looks like

it got bent or slammed in the door or something but isn't..A white

bruise..maybe..weird..

Sue (PCRU) -# 1. finger nails are qetting stronger as is my hair thickening up

and starting to grow faster.

Nails are starting to grow faster as well. Previously my nails would just tear

across.

2. Vasomotor weirdness. My face is bright red all the time now.

Occasionally one of my ears turns bright red and gets very hot. I

sweat profusely many times per day. I chill and sweat at the same

time.

==================

Sharon: have a red warm face almost all the day through.I chill and sweat

at the same time as well..My reddness is brightest immediately

following my taking Gleevec..My son will look at me and say " did you

just take your meds? " ..It is obvious..

Sue #2 Ever thought you may be peri-menopausal - sweats, redness ......

My redness is on tops of my hands and fingers - at times can go bright red -

3. Weight gain. I am on other meds that could cause this (for

diabetes, high cholesterol, etc.), but just wonder about Gleevec.

================

Sharon:I struggle with weight gain..I write everything down that goes into

my mouth.I count calories,protein,watch fats and carbs like a mad

woman.I now have a 10-15 pound float range depending on how much I am

retaining.I also take Lasix to help but itdoesn't help enough.I am

about 6 pounds above my lowest weight ever.

Sue #3. Glivec causes weight gain in many people. I at one time gained 2 stone.

That has now come off and at my normal weight for height ratio. Must watch

everyday.

I still get odeoma around eyes and at times fingers and ankles but only slight

with eyes

being the worst. I use a salt skip program of eating - sodium levels must be

reduced with

glivec - refer to www.saltmatters.org to see how to reduce sodium in diet. If

you reduce

your sodium there are various health positives.

4. Unusual skin problems. My arms are scaly and the skin peels

off in sheets. I soak up lotion like a sponge all over. Things take

forever to heal.

================

Sharon: My skin is dry and I have like blister like spots here and

there.Red blister like things under the skin..Weird again..

Sue #4 Welcome to my world - I am the rash queen or princess if you like.

I have had rashes since the 2nd week of glivec - welts, blisters, hives,

shingles, other

weird looking things so these are glivec related for sure. Glivec and rashes and

me

go together - they are going to be my glivec thing.

Yes like yourself Vicki - rashes, sores, bruising etc take a long time to heal.

Small scratches which would previously just been a scratch become a problem

with bleeding and then sores. I get small blood blisters if a cut etc.

My skin has become paler, very sun sensitive, and soaks up moisturiser like a

sponge.

Obviously the skin needs everyday feeding of moisture. I bleed very easily so

precautions

must be managed. I keep bandaids and gauze at the ready.

Sharon:

I have similiar blisters. I also at present have a blood blister rash that has

taken some

weeks (5) to heal. On forearms, tops of feet and shins. Most have now gone -

and have

a patch left on arm that have nice sores on them. Absolutely gorgeous look.

Anyone asks what happened to you (meaning me) while looking at the sores - just

say Chemo reaction that stops conversation pretty quick - I laugh outrageously

then

say just kidding - you see that reaction - and makes me laugh more.

Rashes: My advise - keep calamine lotion at the ready - cover up so sun does

not

burn you, moisturise - and if rashes change at all or a different type of rash

contact your

specialist asap for advise or see your general practioner.

Rashes are definitely a management routine and not to be taken for granted - can

turn

nasty if left - but always remember girls rashes are only rashes and they are

not a bad Trade-Off

>

> 5. Difficulty with vision/excessive watering eyes.

================

Sharon:

My vision is not as good. I squint more now.My eyes are extremely

swollen.Worse in the morning and they weep and have crusty stuff now

and I never had that before gleevec.

Sue #5 Have your eyes checked by a opthamalogist - (not a technician).

I have my eyes checked every 6 months.

Leuk. in the eyes is very rare but can happen.

Excessive watery eyes - only in the early stages - and only one eye.

That will go away. Funny feeling when you eye keeps filling up with water.

Don't wear eye-make-up - I can talk from experience. Another story - very funny.

Rarely but at times have experienced vision difficulty. you may also need your

glasses renewed with a new script.

Eye odeoma is common side effect.

> 6. Tummy pain. Excessive heartburn and acid reflux. Diarrhea.

> Every single day.

=================

Sharon:I have increased stomach pain and acid reflux as well.I suffer from

IBS w/constipation but since gleevec I have bouts of Diarrhea out of

the blue not related to eating or not..

Sue # only in the first few months of glivec the big D - now that I do not have

dairy foods

within 3 hours each side of taking glivec have no problems - dairy meaning

milk, yoghurt, butter, margarines etc - the whole product range - I found that I

was becoming lactose

intolerant - cut dairy out and only take late in the afternoon - no problems

what

so ever. Took about a year to work out - slow learner obviously - I had one of

those

light bulb moments - and haven't looked back since.

I have not experienced hearburn or acid reflux

I know a lot of these could be diabetes related too, but I had

diabetes before I had leukemia and it seems like they have come on

only since Gleevec.

===================

Sharon: I am also diabetic.I have not changed those meds at all.All these

symptoms have come on since I have started gleevec as well.I am

exhausted all the time and ache all over the place.My daily narcotic

intake has increased since gleevec as well.

Sue # 5 I am not a diabetic

Sharon states " I am exhausted all the time and ache all over the place. "

I have experienced the fatigue the tiredness that spoke of last couple of

days,

and aches. Aches: Depending where you are in your bloods depends on the aches

and pains.

I have had shin soreness, cramps, bone ache to bone pain in specific sections of

bone that you

can cover that area, like a headache in the bone, deep routed pain in hips and

sockets, and

just general ache at times. At present all gone - come and go and now

disappeared.

Keep moving forward and exercise even if just a walk slowly keep moving those

muscles and when

more inclined perhaps light weights etc. My horses are enough to keep me on my

toes.

Vicki: Thanks for your feedback. I guess we're all in this together, right! ?

===============

Yes, Vicki I am in this too.You are not alone.. Hang in there.I have been on

Gleevec for only 6 months.

I was hoping the side effects would lesson as others have stated.Still

waiting.May take longer for me.I

heal slowly also. Good luck, SharonS

Sue # everyone is different and the variables are also to the passive to the

extreme in people.

Keep in contact with your medical specialists. They cannot support or help you

if they do not know what

you are going thru. There is also the Leuk. Foundation and support services

etc.

You will look back and see how far you have come - and when you get a Zavie

Zero Club Number (milestone)

in your journey remember that is only part of your CML journey.

Keep in the best of health Vicki - meaning eat well - balance your life - rest

up - and enjoy your life with family

friends and things you like to do - find a passion (not necessarily meaning a

love affair) but an interest that

you enjoy so that you are not participating as a tourist in life but actually

enjoy contributing in your life.

We have great examples of this from the Salsa Queen (Bobbie) , Lottie, Skip,

Zavie and Tracey who have from what I have read

by giving little windows of their lives other than their quiet determination

of thier CML journey with quiet determination and

what you glean is these people have very rich lives.

I just love the life I have - CML is only a small part of that - not the whole

part of it - and the CML part is one that I have to

manage as well as I can.

Sue

[Guest guest]

--you're so lucky! I am on 600 mg too, started that about a year

ago. It is keeping me in molecular remission, so I feel very blessed

(especially around Thanksgiving when I think about being thankful!).

Some days the little things just BUG me more than others. I don't

know why that is?!!

Blessings to you, hope it all holds on for you and me both. I'd be

very happy if I just had to take Gleevec for the rest of my life,

side effects and all.

Vicki

>

> Sorry no  side affects like that I am on 600 Gleevec and Zetia for

cholesterol,no statants.3 years this dec.

>

>

>

>

> ________________________________

> From:

>

>

>

>

>

>

[Guest guest]

Thanks all for the wonderful responses! I have gained so much

encouragement from this post that I have printed it out and posted it

on my bulletin board at work, right in front of my face. It is

wonderful! Sue, you have to tell me one thing. How much is

a " stone " ? I have always wondered about this and you are in a

position to finally solve the big mystery for me!

Thanks all and big hugs to each one of you. You have helped me

through a tough spell.

Vicki

Oh yes, I also have cramps in my feet and legs and fatigue, too. I

just collapse after a day at work, but I am so thankful that I am

able to do my work. It is a blessing and a great distraction, and of

course I get benefits too, which are crucial with this illness. I am

hoping our new president will do something about healthcare and get

us some sort of system in place that will take care of this.

Hugs to all.

V.

>

> Vicki,

>

> See my comments in line.. Wow..I thought I wrote this post...

>

> I have also posted in colour Burgundy (under Sharons comments) -

Sue (Aussie)

>

>

>

> > Hi! Just checking in to see if anyone has noticed weird side

> effects such as the following (Since they are driving me crazy

lately):

> >

> > 1. Nail weirdness (fingers and toes). Both my big toenails fell

> > off. They did grow back, but they are weird now. My fingernail

> > cuticle area (where the " moon " is) is deformed -- not a moon

> anymore, but more a moon with a tumor!

>

> ===============

>

> Sharon: I or the first time have nice long thicker nails than

before

> gleevec.I do however have a weird white spot on one nail.Looks like

> it got bent or slammed in the door or something but isn't..A white

> bruise..maybe..weird..

>

> Sue (PCRU) -# 1. finger nails are qetting stronger as is my hair

thickening up and starting to grow faster.

> Nails are starting to grow faster as well. Previously my nails

would just tear across.

>

>

>

> 2. Vasomotor weirdness. My face is bright red all the time now.

> Occasionally one of my ears turns bright red and gets very hot. I

> sweat profusely many times per day. I chill and sweat at the same

> time.

>

> ==================

> Sharon: have a red warm face almost all the day through.I chill

and sweat

> at the same time as well..My reddness is brightest immediately

> following my taking Gleevec..My son will look at me and say " did you

> just take your meds? " ..It is obvious..

>

> Sue #2 Ever thought you may be peri-menopausal - sweats,

redness ......

> My redness is on tops of my hands and fingers - at times can go

bright red -

>

>

> 3. Weight gain. I am on other meds that could cause this (for

> diabetes, high cholesterol, etc.), but just wonder about Gleevec.

> ================

> Sharon:I struggle with weight gain..I write everything down that

goes into

> my mouth.I count calories,protein,watch fats and carbs like a mad

> woman.I now have a 10-15 pound float range depending on how much I

am

> retaining.I also take Lasix to help but itdoesn't help enough.I am

> about 6 pounds above my lowest weight ever.

>

> Sue #3. Glivec causes weight gain in many people. I at one time

gained 2 stone.

> That has now come off and at my normal weight for height ratio.

Must watch everyday.

> I still get odeoma around eyes and at times fingers and ankles but

only slight with eyes

> being the worst. I use a salt skip program of eating - sodium

levels must be reduced with

> glivec - refer to www.saltmatters.org to see how to reduce sodium

in diet. If you reduce

> your sodium there are various health positives.

>

>

>

> 4. Unusual skin problems. My arms are scaly and the skin peels

> off in sheets. I soak up lotion like a sponge all over. Things

take

> forever to heal.

> ================

> Sharon: My skin is dry and I have like blister like spots here and

> there.Red blister like things under the skin..Weird again..

>

> Sue #4 Welcome to my world - I am the rash queen or princess if you

like.

> I have had rashes since the 2nd week of glivec - welts, blisters,

hives, shingles, other

> weird looking things so these are glivec related for sure. Glivec

and rashes and me

> go together - they are going to be my glivec thing.

>

> Yes like yourself Vicki - rashes, sores, bruising etc take a long

time to heal.

> Small scratches which would previously just been a scratch become a

problem

> with bleeding and then sores. I get small blood blisters if a cut

etc.

> My skin has become paler, very sun sensitive, and soaks up

moisturiser like a sponge.

> Obviously the skin needs everyday feeding of moisture. I bleed very

easily so precautions

> must be managed. I keep bandaids and gauze at the ready.

>

> Sharon:

>

> I have similiar blisters. I also at present have a blood blister

rash that has taken some

> weeks (5) to heal. On forearms, tops of feet and shins. Most have

now gone - and have

> a patch left on arm that have nice sores on them. Absolutely

gorgeous look.

> Anyone asks what happened to you (meaning me) while looking at the

sores - just

> say Chemo reaction that stops conversation pretty quick - I laugh

outrageously then

> say just kidding - you see that reaction - and makes me laugh more.

>

> Rashes: My advise - keep calamine lotion at the ready - cover up

so sun does not

> burn you, moisturise - and if rashes change at all or a different

type of rash contact your

> specialist asap for advise or see your general practioner.

>

> Rashes are definitely a management routine and not to be taken for

granted - can turn

> nasty if left - but always remember girls rashes are only rashes

and they are not a bad Trade-Off

>

> >

> > 5. Difficulty with vision/excessive watering eyes.

> ================

> Sharon:

> My vision is not as good. I squint more now.My eyes are extremely

> swollen.Worse in the morning and they weep and have crusty stuff

now

> and I never had that before gleevec.

>

> Sue #5 Have your eyes checked by a opthamalogist - (not a

technician).

> I have my eyes checked every 6 months.

> Leuk. in the eyes is very rare but can happen.

> Excessive watery eyes - only in the early stages - and only one eye.

> That will go away. Funny feeling when you eye keeps filling up

with water.

> Don't wear eye-make-up - I can talk from experience. Another story -

very funny.

> Rarely but at times have experienced vision difficulty. you may

also need your

> glasses renewed with a new script.

> Eye odeoma is common side effect.

>

>

> > 6. Tummy pain. Excessive heartburn and acid reflux. Diarrhea.

> > Every single day.

> =================

> Sharon:I have increased stomach pain and acid reflux as well.I

suffer from

> IBS w/constipation but since gleevec I have bouts of Diarrhea out

of

> the blue not related to eating or not..

>

> Sue # only in the first few months of glivec the big D - now that I

do not have dairy foods

> within 3 hours each side of taking glivec have no problems - dairy

meaning

> milk, yoghurt, butter, margarines etc - the whole product range - I

found that I was becoming lactose

> intolerant - cut dairy out and only take late in the afternoon - no

problems what

> so ever. Took about a year to work out - slow learner obviously - I

had one of those

> light bulb moments - and haven't looked back since.

>

> I have not experienced hearburn or acid reflux

>

> I know a lot of these could be diabetes related too, but I had

> diabetes before I had leukemia and it seems like they have come on

> only since Gleevec.

>

> ===================

> Sharon: I am also diabetic.I have not changed those meds at all.All

these

> symptoms have come on since I have started gleevec as well.I am

> exhausted all the time and ache all over the place.My daily

narcotic

> intake has increased since gleevec as well.

>

> Sue # 5 I am not a diabetic

>

> Sharon states " I am exhausted all the time and ache all over the

place. "

>

> I have experienced the fatigue the tiredness that spoke of

last couple of days,

> and aches. Aches: Depending where you are in your bloods depends

on the aches and pains.

> I have had shin soreness, cramps, bone ache to bone pain in

specific sections of bone that you

> can cover that area, like a headache in the bone, deep routed pain

in hips and sockets, and

> just general ache at times. At present all gone - come and go and

now disappeared.

> Keep moving forward and exercise even if just a walk slowly keep

moving those muscles and when

> more inclined perhaps light weights etc. My horses are enough to

keep me on my toes.

>

>

> Vicki: Thanks for your feedback. I guess we're all in this

together, right! ?

> ===============

> Yes, Vicki I am in this too.You are not alone.. Hang in there.I

have been on Gleevec for only 6 months.

> I was hoping the side effects would lesson as others have

stated.Still waiting.May take longer for me.I

> heal slowly also. Good luck, SharonS

>

> Sue # everyone is different and the variables are also to the

passive to the extreme in people.

> Keep in contact with your medical specialists. They cannot support

or help you if they do not know what

> you are going thru. There is also the Leuk. Foundation and support

services etc.

>

> You will look back and see how far you have come - and when you

get a Zavie Zero Club Number (milestone)

> in your journey remember that is only part of your CML journey.

>

> Keep in the best of health Vicki - meaning eat well - balance your

life - rest up - and enjoy your life with family

> friends and things you like to do - find a passion (not necessarily

meaning a love affair) but an interest that

> you enjoy so that you are not participating as a tourist in life

but actually enjoy contributing in your life.

>

> We have great examples of this from the Salsa Queen (Bobbie) ,

Lottie, Skip, Zavie and Tracey who have from what I have read

> by giving little windows of their lives other than their quiet

determination of thier CML journey with quiet determination and

> what you glean is these people have very rich lives.

>

> I just love the life I have - CML is only a small part of that -

not the whole part of it - and the CML part is one that I have to

> manage as well as I can.

>

> Sue

>

>

>

>